MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Wednesday, 25 February 2015

I must say happy though I am for the predictable recognition that Eddie Redmayne received on Sunday night for best actor at the Oscars - and the dedication he made to people with MND/ALS in his acceptance speech, I am disappointed that no recognition was afforded to Felicity Jones for best actress, portraying Jane Hawking. As I've commented previously his was a bravura performance of a bravura role. Her role was far from bravura and demanded a subtle contained performance, and that was exactly what she gave it: beautifully nuanced, tracing the patterns of shade and light in the highly condensed account of a relationship of more than forty years. I would have dedicated her Oscar to all the unheralded carers of us who have the disease in one form or another. As one of our friends whose wife had a frighteningly fast type of MND said to me after watching the film, "I thought it was brilliant but, oh, how painful it was to be reminded of that journey!"

On Sunday the BBC Songs of Praiseteam decided to base their programme round the Oscars. They interviewed Jane Hawking in Cambridge and filmed her singing in their church choir conducted by her present husband, Jonathan. She was great, very articulate and clear about her faith. Someone in the BBC had seen my previous post about the film, and thought that an interview with my Jane and me might fit in as an added extra. I suppose the parallels of my having MND like Stephen Hawking and our both having wives/carers named Jane worked nicely. So nine days previously, before we went on a short break, the film crew arrived with the presenter, Claire McCollum - loved her Ulster accent! - , and all their equipment. They certainly knew what they were up to. While Nick, the cameraman, Lindsey, the researcher, and Karen, the producer, worked away at setting up the equipment, removing the ticking clock (!), and arranging the shots, we relaxed and chatted to Claire. I suppose the actual filming took under an hour, mostly in one take - for which I was grateful as it's never easy to repeat exactly what you said (unless you're an actor, I suppose).

Anyway they soon packed up and zoomed back off to Media City in Salford, and next day we went off for a break in Devon. I put Songs of Praiseon to record - of course. But we were actually able to watch it live, but it wasn't until half way through the programme that we were sure we'd appear. In what was a rather good programme over all, ours was, I think you might say, a cameo performance - being a minute or two long - but I must say I thought Karen had edited all my waffle very skilfully. As I've said elsewhere, there always things you wish you had added. When Claireasked me something about my strong faith sustaining me. My answer was something like, "I'm not so sure about it being 'strong'. Sometimes it feels I'm hanging on by a thread…". That's when I wish I'd said, "But I've discovered that God keeps holding on to me firmly." However our bit ended positively with Jane talking about hope and then an upbeat contemporary worship song.

Afterwards it was fun following the Facebook comments which dribbled in that evening and the next day. One of the nicest comments, on Twitter, was from Claire McCollum herself:

"Feb 22: @mwenham you and Jane were just brilliant! So glad u enjoyed it. A pleasure to work on this one! Take care. Btw really enjoyjng ur book. C"(Which reminds me, you can get discounted copies of My Donkeybodyby contacting me on michaeltwenham@gmail.com!)

So I'm happy on this occasion both to compliment the BBC for a job well done and to congratulate the Songs of Praise department on a nicely crafted programme. And finally I must say how good the film crew were and of course how lovely Claire the interviewer was!

Thursday, 19 February 2015

There's an expression, isn't there, about sowing the wind and reaping the whirlwind? I fear we are seeing its truth in the world today.

The West (and yes, I suppose I mean our government and its allies, encouraged by public compliance) has persisted in presuming to know what's best for other sovereign nations, especially but not exclusively in the Middle East. Parties of both the left and the right have waded in where angels fear to tread. And so in our name the government launched a war (with our big American brother) on Saddam Hussain's Iraq; then we encouraged the Syrian rebels to rise against President Bashar al-Assad and provided air-cover for the rising against President Muammar Gaddafi of Libya. Well, it seemed like a good idea at the time.... Well, I'm not so sure it does now. Now IS is carrying on its bloody business not so far from Europe in the chaos that is Libya. The trouble is, as Egypt's president said, is that we leave unfinished business - which extreme jihadists willingly complete, with dreadful results.

We do have a fanatical belief in Westminster-style democracy as the fit-all for every political situation. It's arguably the least worst model, but it's clearly far from perfect. Shakespeare shared the Elizabethan fear of usurping the throne from the monarch. It was like dethroning the sun from the sky. It's a tradition which went back centuries. Respecting the emperor was something Paul enjoined on the early Christians, even though Roman emperors were as corrupt as the worst of modern dictators and not known for their benevolence towards the peaceful Jewish sect. The reason is what we read in the news every day - that, whenever you create a power vacuum, all sorts of contending forces come and try to fill it; and the ensuing chaos is hellish.

Even in Ukraine where we weighed in on the pro-European side the result is proving counterproductive, provoking the Russian bear and dividing a previously united nation. What is hard to understand is the lack of imagination of our policy-makers. One question should not be too hard for them to ask themselves, and that is this: "What would we, as the British people, feel if China or Saudi Arabia were to tell us how to run our country and then do all in their considerable power to bring about the change they prescribed?" No doubt what the answer would be.

Friday, 13 February 2015

I feel I mustn't miss the opportunity of wishing all my readers (especially younger ones - not that romance need ever die!) Happy Valentine's Day. (If you're not "in a relationship" and hate the whole Valentine's thing, don't stop reading. I think our society overrates it, as I'll mention later.) In the film of the musical the orphan Oliver sings that plaintive little song, "Where is love? Does it fall from skies above?" It is the question of every human being. However you will not find the answer, I'm convinced, by watching the film, Fifty Shades of Grey​, specially released for the weekend "of love".

"I help people who are broken inside. I ask questions, and listen carefully to the answers.

One thing I've learned is that young people are utterly confused about love — finding it and keeping it. They make poor choices, and end up in lots of pain.

I don't want you to suffer like the people I see in my office, so I'm warning you about a new movie called Fifty Shades of Grey. Even if you don't see the film, its toxic message is seeping into our culture, and could plant dangerous ideas in your head.

Fifty Shades of Grey is being released for Valentine's Day, so you'll think it's a romance, but don't fall for it. The movie is actually about a sick, dangerous relationship filled with physical and emotional abuse. It seems glamorous, because the actors are gorgeous, have expensive cars and planes, and Beyonce is singing. You might conclude that Christian and Ana are cool, and that their relationship is acceptable.

Don't allow yourself to be manipulated! The people behind the movie just want your money; they have no concern whatsoever about you and your dreams.

Abuse is not glamorous or cool. It is never OK, under any circumstances...."

The writer outlines and answers 6 myths that the film (and contemporary culture) promotes. I heard Jamie Dorman, the lead male, defending the film's abusive relationship on the grounds that it was "consensual" and therefore OK. What rubbish! As the psychiatrist concludes,"There's no room for doubt: An intimate relationship that includes violence, consensual or not, is completely unacceptable.

"This is black and white. There are no shades of grey here. Not even one."

And what about those who aren't romantically attached? Well, we should remind ourselves that romantic love is neither the highest nor most fulfilling of loves, including as it does naturally a large element of self-gratification - the reason it so readily gives rise to abuse. Friendship, family affection, and selfless love are great gifts. Of which the greatest is the last.